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Wednesday, February 1, 2012

Tuesday was ordinary, maybe even a little less than ordinary because I was multitasking in ways that had me frazzled, not quite present, edgy even. Ballet followed by lunch with friends was a nice retreat from the craziness I had created that day--a lost to-do list, papers scattered on my desk, clothes thrown on the floor, an unmade bed. It wasn't a bad day. It just wasn't, well, great. I'm okay with that. They can't all be fireworks.

By late afternoon, I lost such direction that I stood in the middle of the room not once, but twice, and said out loud, "What was I just doing?" And somewhere around mid afternoon, when I noticed the long shadows in the driveway and the sun's arrival over the back woods where it begins its nightly retreat, I decided I wasn't letting the day go down without a fight.

I still had things to do, a house to tidy, mouths to feed, but suddenly at that moment the most important thing was finding a way to resuscitate life back into our day. Like it was hidden in a game of hide-and-seek and my challenge was to find it.

No brainer. It's at the beach. I didn't really have the energy to pack up pails and shovels and head out, and I knew Brett wasn't in the mood either. But maybe those are the times you need it most--when it's work. It started begrudgingly--our quick preparation to take the girls to a beach sunset--but by the time we drove the four miles and caught that pink horizon from our windshield right before we pulled in to the parking ramp, everything settled and my lost direction was suddenly clear.

We arrived just in time as if that heavy pink sun hung still right before it hit the water line, waiting for our arrival.

Onlookers clapped like they always do once it finally fell, and we stayed and relished its afterglow.

Nella walked the beach for the first time, her little body confidently trudging right toward the gulf. It knocked her down a few times, and she shuddered as the cold water lapped over her legs and diaper. I pulled her back into dry sand, away from the intimidating waters, but that didn't stop her. She trudged forward, like Joan of Arc, again and again and again. To conquer the water, to seek the thrill.

Yesterday, ABCNews.com did a story on Living with Down syndrome and Nella. Cara, the producer, did a beautiful job, and I felt so humbled and honored to have the opportunity to represent this amazing community of parents and share what I believe to be very important--that we all have a choice in how we embrace hardship, and that it can open the door to living a bigger, better life. It's a story we share with many. But, for some reason, I read the first comment after the post--nothing I haven't heard before, a bit of a *yawn* by now--but still, the presented concept pissed me off at that particluar moment. That, my God, a story of a family living life to its fullest and celebrating their child who is doing great is ridiculous because our kid is two and it's going to get so much worse. Here's the thing--this person is completely right in the fact that it's going to get worse--more hardship, far more difficult challenges than, say, occupational therapy. My opposition to the comment really has nothing to do with Down syndrome or negativity in a comment--we deal with both on a regular basis, and we tend to forget about them respectively.

The problem I have with it is the theory that happiness and perspective and grabbing life by the balls is somehow discredited if challenges are still ahead. I got fired up, something I don't often do anymore over a silly comment. Because if there's one thing I have a problem with, it's joy-suckers. Don't suck my joy. Don't suck someone else's joy. You think I don't know what's ahead? You think I don't have moments where I put myself there--ten years from now, thirty years from now, fifty years from now? You know what statistics say? I know damn well it's a hard, hard road and there will be tears. But I trudge forward. Like Joan of freaking Arc, and I embrace the challenges and choose to be happy. Knock me down, Waves. I'll get back up. I do cartwheels, okay? In my driveway. Sometimes in my nightgown. And I will never stop trying to live life this way.

There is reason for everyone to be unhappy. There is reason for everyone to be happy. What's your focus?

I've been thinking a lot about adventure seeking. How people choose to climb Mt. Everest knowing it's a brutal challenge. How my friend, Melina, slips in a kayak and paddles through life-threatening rapids because she wants to feel the thrill. How runners train for marathons when, certainly, a 26-mile run doesn't promise a pleasant experience. How surfers suffer concussions and yet get right back out there because there's something bigger on the other side. Adventure, victory, adrenaline, the self-awareness that comes from conquering something difficult.

You can look at this big picture or small picture; it works both ways. Heading to a beach sunset even when you don't feel like it. Pulling the craft bin out in search of glitter, knowing it will make a huge mess. Signing up for an African Drum class even though it's one more thing on your already busy schedule (I'm thinking about it). Choosing to embrace the heartache of raising a child with Down syndrome and being happy, exhuberant, determined in spite of it.

My point? You cannot wait for Life to come to you. You have to go get it--pursue it in a wild, passionate chase that includes the foreboding depths of challenge and heartache just as much as the ecstacy of triumph and success. You have to want it bad enough to seek it not only when things are rough and the pursuit of it brings the hope of change, but when things are comfortable and easy, and the quest for more living--more purposeful awareness--might even make you scared. It is in that fear--that breathtaking exhileration of "What If?"--that you rise to the occassion.

You step out of your comfort zone and experience the thrill of taking risks and the possibility of believing that, sure, things might be good, but if you stretched a little further, they might be great. I want to know great. And I will work hard to find it.

Totes are affordably priced, and there is a great variety of sizes available. Happy Shopping.

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Also joining Enjoying the Small Things this month is Mom Colored Glasses, a site dedicated to inspiring moms by providing ideas and information in a fun, well-organized way. One click on their site will lead you to a great collection of articles, recipes, crafts, forums, and little things that will surely make you happy. From ideas for better living to suggestions for both the best kid and mom books, it's a colorful, lively place to be--a great source for motherhood inspiration.

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I'm chasing life this week. Planning Nella's little party this weekend is helping.

Tea Party in the Woods to come. We will announce and celebrate the closing of Nella's 2 for 2 Fund after this weekend.

And in case you lost that beautiful piece ABC News did in my fiery sermon, you can watch it HERE.

Oh, that last picture made me smile so hard. Also, the "what's your focus." It's hard. Hell, it's hard without a child with challenges to stay focused on the happy, the here and now. So, people who only want to admonish our loving life regardless of obstacles and want us to fret over those obstacles...bite me.

Dude. That comment-er is so wrong, and you are so right. Don't let them steal your unicorn. Who would you rather be, you (choosing joy) or them (turning away from joy)? Whose friend would you rather be? Whose spouse? I always think that those people must have it so hard. Because let's face it, every life is going to have their share of hard things. The whole point of life is how you act DURING the hard times, not being able to have joy when things are easy. Keep on keeping on.

I'm so glad you addressed that comment. It really stuck in my mama lion's thumb like a painful tack, too, even though I know that person is an idiot. Yes, we will have challenges ahead, but I don't think she had a very good grasp of what they will be. Bleh. Anyway, I, like you, will continue to cherish today's happiness rather than stealing from today's or tomorrow's. Life is too short. And our kids are just too cuddly and wonderful!

That comment got me all fired up too, can't even imagine how you must have felt! Ahhh....breathe! Thank you for sharing yourself and your beautiful family with us, and thank you for not the joy suckers win!!

Good for you!! I'm right there with you with my glass half FULL because thats how I want it to be!! I will deal with the challenges, the tough times, and all that life throws my way, and still that glass will remain half FULL!! Thanks so much for all you do!!

We did the beach thing on tuesday, too...though armed only with apple juice and chips. You inspired me months ago to make our trips more spontaneous, and we have. Also, we almost had to kill a flock o' seagulls. I love the beach.

Naysayers will always exist. Keep doing what you're doing. Just because you blog, and just because you might profit from it, does not mean everything about your family is up for debate. Hit the delete key and sleep peacefully. Life is yours, Nella is yours, and the space you publish in is, too.

My mantra has always been...in our blessed journey with Nella and with my blessed privilege of being a chaplain in a hospital--"Don't let the worries of tomorrow steal from you the joys of today." I read comments like that and I remember there are people whose life lenses seemed to be set that way. That is fine...for them. Not for me. And those people I am sure will attract and connect with others who share that lens. Again...fine. I tend to collect and connect with others who enjoy the small things of today while well aware tomorrow may bring shadows. I am not angry with those comments...I am just grateful I would not have that be my first response to seeing and reading news and views like this article contained. Yes, sometimes we just need our "beach" wherever and whatever that might be. A hearty "Amen, Sistah!" from Michigan here!

Love the last picture of Nella! She is a doll!I got fired up about that comment when I read it yesterday too - it made me so angry. And then I read the other comments and was encouraged for you. Then as angry as I was, I actually started feeling sorry for ol' Marsha Marsha. It must be a terribly sad and depressing life she lives. Thank YOU for choosing joy and for sharing it with us, your readers. You encourage me with every post!Blessings!

Saw the piece on ABC. You expressed yourself so well. I am inspired not only by the story of your life and challenges you tell but by the way you tell it! Thank you for sharing yourself with us. It's not always the easy path to be yourself in front of the world. Leave the nay-sayers to their negative world. Rising to the challenge with a positive attitude should be every persons aspiration.I love the look on Nella's face in your last photo. My two year old often makes my heart soar with these little unguarded moments.

that last pic is PRICELESS. I never saw that comment, but I'm glad you didn't let it suck your joy. It never ceases to amaze me how many joy-suckers there are out there- but yesterday we saw how many more joy-givers there are in contrast. (thank you, kelle.) I wish Lily and I could surprise you by showing up for Nella's birthday party..looking forward to the pictures instead:)

It's really terrible that others feel the need to spread their negative energy.I would just like to say that your girls are extremely lucky to have you as a mom. Your strength and great positive outlooks will really set them up for wonderful lives!

I think this is one of your best blogs yet! Thank you for getting fired up! We all need to be fired up for our children, thank you for the reminder! (I can kinds see you giving them the finger while cleansing your soul...respectively of course!) I love to be reminded that our lives are and will be hard, but are so worth it! We know love that others may never! Thanks again, love the photos as usual, the last one of Nella is my favorite! blessings, Traci

I watched that ABC piece last night and thought, not for the first time: Kelle Hampton is my hero. Precisely because of your decision to turn something potentially sorrowful into something to celebrate. Because TODAY, there are small things to enjoy and tremendous things to cheer.Blessings to you and the joy YOU spread,Rachel

I don't think we can help but get fired up when people seek to "suck joy" or push us down when we're riding high on life. To each his own, but didn't we all learn- "if you don't have something nice to say, don't say it at all." It stings, and it's hurtful because even those of us with our wishful thinking or the occasional "head in the clouds" demeanor know full well the reality of this world...the cold, dark and cruel place it can be. All the more reason to focus on the unicorns and rainbows, my dear. Life is hard. No one said it would be easy...but no one said you had to go about it alone. Cheers to your family and your village. You make this world a brighter place, one step (or day) at a time.

That is right!That's why you inspire me and foh sho changed my life!That's how I managed to live through many years of cell - and still am alive and kickin'.That's how I live outside (way outside) my comfort zone 8 hours a day at work and wouldn't be in one piece if I didn't .That's just it. The way I choose to feel and live.Choosing happiness. Choosing to hang out here for weekly fixes!

What a poignant and beautiful response to a dreadful comment. I've been reading your blog for a long time (I think since Nella was born... as my daughter is the same age!) and I so admire your ability to seek out the positive. You go girl!

What a beautiful, honest, heartfelt post. People who are joy suckers do not need to be a part of our lives. Unfortunately, they come across our path occasionally. Being positive is so much better all the way around than being negative.

We don't need to borrow tomorrow's worries and sorrows, today's are enough. We need to look for the joy and beauty in each day and that's what you do with your photos and words.

God, I wish with all my heart and soul that I could have half the positive attitude that you do. I actually chose positive as my one word to concentrate on in 2012. Because I'm just not. I'm not positive. I don't think I ever have been. I'm convinced my brain would be a sad sad host for anyone.

I think that's why I continue to come here. It makes me cry every time because I see what I'm missing and I want it oh so badly. But I still can't seem to find it.

I feel so much pain a lot of the time. And it swallows me and who I could be whole.

I think you are so brave and every time you "raise your voice" I am standing and clapping with you. Like, hell yeah, man! Hell yeah.

Yes!!! Exactly!! I wanted to jump through the computer and find that commenter and just...shake her? hug her? cover her in sunshine and happiness? Something!! Thank you for being the amazing and fabulous Mama you are!

That comment, that first comment - it got under my skin yesterday too, Kelle. I thought about it all day and night, wondering why and how someone feels the right to spread such "blech" - especially after such a beautiful feature about such a gorgeous, vibrant two year old and her family. But that commenter, I finally realized, chooses to focus on pain and fear rather than joy. And we can only feel sorry for those who cannot see the sunshine for the shadows. Kelle, I follow your blog because YOU remind me with each post of the beauty in the world, beauty I can take from your wonderful prose and amazing photos and transfer into my own little world. Joy shared is joy multiplied, and you inspire us all daily to embrace life and all it offers. Thank you, Kelle, for all you are to all of us.

For 100th time I've read or heard the birth story, I cried again ;) It was a beautiful day and rebirth of your life and joy.

I also read that first comment - why is the first commenter the worst?! That person is an idiot to suggest you chose a hard life. The only *choice* you made is to let your girls' love and acceptance lead the way.

As a parent, we will always fondly look back to the first few years of our babies' lives to remind us of how they became who they are. You are giving both of your girls an unlimited path, no matter what the world or the past might have told you. No matter what happens in the future, you will never regret living this life, right now, to the fullest.

You are one of the most amazing mothers that I know (er, know through this fantastic world of blogging), and the fact that you can share the triumphs and joys, along with the chaos and tears just comes with not only parenting a special needs child, but just parenting a child (period) serves as inspiration and (at times) guidance for the community that has grown around you. Keep on keeping on Kelle!

These photos are absolutely lovely, and your words ... your words? Are ever so beautiful. You were meant to write. I can feel such emotion through them, simply by reading. That's a beautiful thing. I admire your strength and kind heart. truly.

This story meant so much to me. I used to work with people with special needs in an adult day program, and let me tell you, there are going to be so many opportunities for Nella that you can't even imagine yet. She's so lucky to have you, your husband, and her sister fighting in her corner. Not every special needs child has that. She's already got a head start on all of the fun, laughter, hard work, and joy that life can bring. Just keep doing your thing, Momma, you'll be so pleased with how it plays out, I just know it.

Thank YOU, Kelle, for being a joy-spreader. Some people will always have something negative to say. let them. it can just serve as a reminder to you that you choose optimism, joy and happiness. I do too. :) GORGEOUS images in this post. i love the way you capture the beauty in everything.

I like your mother bear in this post: keeping the boudaries in place, remembering what is important. I was shouting "yes,yes,yes" as I was reading.More than anything, this is probably why I read your blog.

While I don't know you Kelle - I freaking love you! So much so, that someday when I "grow up" I want to be you. We'll look past the fact that I'm a few years older than you chronologically. This Momma is taking your lead and will finally, finally put Autism aside and grab life "by the balls" as you say. Thank you for your direction, perspective, and inspiration!!

I LOVE LOVE LOVE everything about this post...getting out there and doing something even when you don't feel like it and having that sense of "feeling right" when you do! The way you explained your feelings after that comment. Oh you read my heart. CHOOSING to have a positive outlook...CHOOSING to help our kiddos the best we can, CHOOSING to live life to the fullest no matter what challenges lay ahead...that is where ethe beauty lies... it is not that we don't know there will be difficulty and we are in denial...it is that we know there will be more difficulty so we NEED to enjoy every moment we have! EVERY one! hard and enjoyable.

oh i just LOVE this post!!

Thankyou Kelle! and like others have said...that picture of Nella at the end...oh boy. it literally made me gasp. there is just something about the precious girl in curls...and the post she's striking...oh so beautiful nella!

I've been reading your blog since my son was born last feb, i found it by accident. But what a great accident. I turn to your stories at the end of a sometimes defeating day and they make me smile. you are inspiring, so thank you :)

You are a fabulous mom Kelle! Don't let those joy-suckers get you down! I have a friend that did not find out her baby had downs until they were about to leave the hospital the next day. She is one of the most positive, inspirational, BEAUTIFUL on the inside and out, (just like you are) person that I know. You are right about all of your beliefs...letting Nella define who she is and not a name of a syndrome she has. Your girls, your boys, your whole family is an inspiration!

YOU GO GIRL!!!! You are such an inspiration to me & so many others. Fuck the joy suckers. They suck. They, too, have the choice to enjoy your site or stay the hell away from it. Sending love your way..this post got me all fired up!

You know we all hear those kinds of comments from time to time, but I am glad you responded to that particular one. I honestly sat fuming for at least 20 good minutes after reading it yesterday. I think what got me most about it was the fact that the person made it seem like as parents of little ones with down syndrome we arent allowed to love ours and be happy simply because things were going to be hard............. Thank you for being so much more eloquent with your words than I am capable of being.

i needed to read this today. We have been struggling with my oldest child and his anxiety since he was 2 and he is now 7. I have come to the conclusion this week that it is not getting any better and he is NOT growing out of it. It is keeping him from enjoying life as he should. I have been so afraid to talk to a dr about it, to label him, for fear of the stigma. But reading this helps me realize that maybe this was given to us for a reason; maybe we can help others recognize the signs sooner and get help more quickly and to not be ashamed. Every time I think of all the times his behavior has embarrassed me, I cringe. But all I can do is start fresh today and look forward to better tomorrows. Thanks for helping me see the big picture, Kelle. You are an amazing mother and an inpsiration to us all

Can I get an AMEN, Sista! Love your words and your attitude. And I love that photo of Nella at the end even more. She's bright and pensive. I wish I could know exactly what she's thinking in that moment.

What a touching, beautiful, candid, loving piece. There are always mean people and some days they can get to you more easily than others, but remember your focus and your joy. Poor mean people have none - of their own making. And that's sad.

You are a brave soul. Someone who inspires me to fight the good fight every day. And you are spot on with everyone has something to be happy about and everyone has something to be unhappy about. Life is about what we make it and your fierce drive to create memories, seek thrill, and embrace the hardships without letting them immediately meaning heartache, is such a light in this world.

I can't handle that last picture of Nella. Such a bunny girl. (Also can't wait for the tea party!)Your post reminds me of the quote, "How we spend our days is, of course, how we spend our lives." (I forget who said it.) The way you chose to spend your Tuesday evening, with joy and exuberance instead of letting the sun set without partaking, is the way you spend your life. And that is beautiful, my friend. xo

Kelle, you totally inspire me. Too often, I get stuck in the mire of the 'have-nots' and you've challenged me today to think about what I do have and how many opportunities I'm given to be grateful. Perspective, baby, perspective. Thanks for sharing your beautiful heart with us. XO

I love the emotion that you put into this post. Not to say that all of your other posts are emotionless, because they are definitely anything but, but I could feel the "protective Mom" emotion in this one. Thanks for keeping it real!

Every life will have challenges, yours and Nella's may be different than the norm, maybe not. Most of us could not have guessed we would be where we are now. Thank you for the wonderful reminder to appreciate each day and all its joy.

Thank you for taking the challenges and oh so many blessings you have been given and sharing a bit of that joy and love with all of us.

unfortunately this is a fact- challenges are ahead. And I mean for every single human being.

and yes, there is something about KNOWing your challenges or likelihood for them that can be daunting. like when thinking about the future for nella. sure. ( but wow. the challenges we dont know are coming. ugh. hold on tight) but im just freaking thrilled about your spirit. i just bottled it next to my latte.

Theres something very true though and that is the "every day" which is strikingly similar in every person's life no matter the challenges. I guess I feel like your mantra. which i share. -->joy 1st. is part of a greater picture that is universal. not just related to overcoming or fighting. not just to ignore. or shove away fear. but it was one you had pre-babies. and it is one you have even greater now because of the gifts they have been in your life.

so put me on the joy team. ( as opposed to the joy sucking team. also titled snakes) i will have wrestling singlets made. just send me your sizes.

( joy suckers are the bane of my existence. and i wish, for them, that they can turn fear into something entirely more enjoyable like beaches and popsicles. but really. i wish for them- hope. because without it the world would be gross and predictable. and that... it is not.)

and my friend has a 15 yr old son with down syndrome. there may be challenges. but there isnt "worse" he kicks ass.

You ROCK! I always tell my girls, it's all in how you look at it, you can sit and wallow and boo hoo, or you can get up and find the joy! Some days are hard, but that makes the good ones even better! LOVE, LOVE that last picture of your cute baby!!!

Amen.. Some people will never be happy -- regardless of their life experiences (good or bad) -- You go with your bad self.. Thanks for finding the joy in life. It's the only way to be.. love...love love you..xoxo

antastic post. i needed that little kick in the pants today for myself.

my own daughter, who is four and is non-verbal (pre-verbal??) and cannot feed herself, accomplished an amazing feat this morning at preschool. she fed herself applesauce for the first time, at the urging of her teachers and to the cheering of all the boys in her class!! my girl, who always embodies the joy that life has to offer though cannot express it in words, seems to know exactly what you are talking about. she grabs the moment and squeezes the marrow out of it, like you.

tomorrow is our first feeding therapy appointment in six weeks, and i get to report to them that she not only ate a piece of pizza last night by CHEWING it (she hasn't done much chewing up to this point...), but she now is expanding into feeding herself. and my God, i couldn't be more thrilled!!!

thanks for the great post. there is much joy out there... sometimes you just have to seek it. :)

you are far from blind. you see the challenges. you are the one wearing the shoes of a mother of a down syndrome child. your choice of focus couldn't be a more right approach. i'm so glad you went to the beach. what a way to tie it into your beautifully written story. your babies have a joyful mom. those little people are blessed. the end.

Just because you are enjoying today doesn’t mean you’re living in a cloud and think life is easy. . .that Down syndrome is easy. There are battles that come with having a child with special needs as they grow, especially with inclusion. But I’m 10 years into this journey and I think it may be easier now than when she was 2. Don’t you let anyone suck your joy. It’s all about attitude and perspective. You were born to share joy and inspire!

Miss Kelle, watching your video I understand better what you mentioned in Nella's birthday post about your not embracing those first hours together. To hear it in your voice, it made me appreciate and mourn your own grief.

In regards to the negative commenter, I absolutely think you have the right out look on life! To choose happiness, focusing on the positives I think it's best way to be, and in some cases the only way to survive. Can you imagine how much Nella and Lainey would lose if you chose to only focus on what may come. I don't think they're lives would be better for it.

But maybe, rethink the drum circle until you have a little more breathing room. :)

BRAVO Kelle! F-in-A bravo! this post was amazing! RAW filled with anger and frustrations...love and joy. We "real optimists" don't need anyone to remind us that life is shitty...we know it but choose to laugh it off and move into the light. don't know you... but LOVE YOU so much and those little girls. If we were friends, we would rock it soooooooooooooo hard.

Yes!Yes to joy spreading, to facing challenges & moving forward though life with a spirit of adventure.Yes to you & your unicorns, rose colored glasses & marrow sucking way of life.Loved the ABC piece... and that last photo of Nella is one of my all time favorites!xoKate

Keep your head up Kelle, I know you do 99.9% of the time....it amazes me how people can't stand positivity....its like if they can't be positive there is no way anyone else can either without being fake or phony.

You say it all right here

"There is reason for everyone to be unhappy. There is reason for everyone to be happy. What's your focus?"

I for one love your outlook on life, and even though I may not be able to "rock out" life quite like you, I take inspiration from you. I do not compare, I learn and I grow from you and others. Keep on keeping on sister friend!

Long time reader...first time poster. I have 2 daughters as well. 10 and 8. Our 10-yr-old was born with Oculocutaneous Albinism. She was diagnosed at 10 weeks and Nella's birth story spoke to my soul. Your thoughts/tears/emotions of that day mirrored the first 24 hours after we learned the news about our platinum angel. Today's post runs a close 2nd to that post in terms of how powerful & inspiring your words are. Thanks - once again - for touching my soul!

*This* is why you are awesome and I love your blog! I have followed you since you wrote Nella's birth story and, as a mother of two little girls, I continue to relate to you and find inspiration from your positive spirit. Life can be hard, period, for a variety of circumstances and reasons. It's how you choose to live it that makes all the difference. Once again, you have dealt with adversity so eloquently.

I read this painted on a wall.."you're living your story"! I choose to live my life with joy not as a Debbie Downer. Our 3 kids with Down syndrome, ages 23, 19 and 14, are doing very, very well. We have a great life. Loved your post!

People can say what they want kelle, but honestly just what this post was about life is what you make it. we have the energy and the power to make and shift our lives into what we want. if people choose to just concentrate on the "bad" than that's all they are going to experience. Yes Nella has down syndrom. Yes there are risks. But there are risks in everything. and none of us know what life may throw at us tomorrow. i don't believe in dwelling and drowning in fear, why should we. it's here and now. there's nothing but the hear and now. right now? nella is happy and healthy and we can all see that. a huge part of that is what you have chosen for her so far. i think you are doing a most wonderful job. and she is benefiting so greatly. you are teaching that little sponge so much already. she is learning how to cope with life by the example you set for her. i think that no matter what you guys are going to be more than okay. and the energy that you bring will surely do it's wonders when needed. i believe in magic and don't cha worry those unicorns will sprinkle there magic dust on nella and she will be fine. no matter what she will be fine. and we are all here to support and help you out so there meany commenter :P stick that in your pipe.

We are 21 years down the road you are traveling and have found the burden light and far outbalanced by the joy we have living with our extra special girl. We comment frequently how much more joy we get from our girl than any of the other three children we have. I think you will find as you journey forward that you will have very few tears caused by Nella and such joy and blessing having her that the tears will be as nothing.Enjoy! The days pass so quickly.

GET IT, KELLE! :) I got fired up right along with you! So many wonderful and inspiring things in this post -- thank you for opening your heart & sharing & being vulnerable, even when there are joy suckers out there. This post is definitely getting bookmarked to reread many-a-time in the future!

That last photograph just about broke my heart into a million pieces with the absolute beauty of it. Live your life with joy, honey. You certainly inspire so many (me included) to do so. Must also add, I'm a bit jealous of your sunsets. We live on the Atlantic side of Florida and I just can't seem to get myself up early enough to enjoy the sunrises! Alas. :) I enjoy seeing your sunsets. xx - another mama from Florida.

Your blog is so full of inspiration, hope, love and beauty. I could read it all day long. I always look forward to your next post. The video was beautiful. I feel like I know your family, through your blog and I just cried watching it. I would love to squeeze your kids with hugs. Its too I live too far away. lol

Momma, you rock! I have learned so much through your blog, and my ridiculous views of DS have completely been changed. Thank you for opening my eyes. Thank you for changing me. Thank you for inspiring me.

Loved the video Kelle!!! You did such a beautiful job. Oh my...that last photo of sweet girl is beautiful..my favorite one so far I think!!! The little curls! The sweet face! Her expression...her eyebrow...Oh my gosh. LOVE HER.

...Joy-suckers...Uuugh. There's always gonna be one or two in the bunch. Seriously. They need their own colony.

YOU are amazing - your girls are amazing. I join the thousands when I say that. I've said it before and I'll say it again - YOU ROCK mama! xo

Kelle,I read the article and watched the video right after you posted it on FB. It WAS amazing. You are an inspiration to anyone facing a struggle in their life. While I read that first comment I also read the many below that were in support of you and your efforts. Sometimes people are so realistic that they cannot see the beauty of life.

Amen Kelle - you said it perfectly. I hate when people come and suck the joy out of things for others - it is a choice to live in a positive way and I think it is great that you do. Nella is so amazing like so many other kids. I love the last picture of her she is getting so big! I loved the interview, it made cry. Stay positive and just keep doing what your doing. Can't wait to see all the pictures from Nellas party - I know it will be amazing.

first tears at the rawness of your video and then a "hell yes" on all accounts.the DS community is so lucky to have you as one of their voices.with that said, let the joy suckers be gone!thanks for being an inspiration.

This post inspired one of my own - you are such an amazing woman (and I don't mean that in the "crazy fan" way). If you're interested, you're mentioned here: http://gluttonforhope.blogspot.com/2012/02/girl-crush.html

You're a wonderful mom, Kelle. Wonderful. The life that you're creating with your family is precious beyond words, as well as how you share it with all of us. Thank you for your honesty. And for pushing through for that great life. Life is to be celebrated, even with the reality that it won't be an easy road. But one that is SO rich and full of beauty if we just look for it...as you do! This post really pushes me to keep looking for the great and the beautiful and making the most of life. Our little (twin) girls were born at 26 weeks weighing just over 1 pound (700g) each. The statistics for severe disabilities and even not surviving long were huge in those first days. But we can't just give up because of some statistics huh. We continued to sing, read, talk to and spend as much time as we could caring for the girls during those long months. Now they're 21 months, a little younger than Nella. Still a couple of scary issues, but...SO much to be thankful for and to celebrate more than being weighed down by the possibilities. Good on you, Kelle. LOVE the last photo too :)

As an educator to children with special needs, I wish more of my parents were like you. Who chose to live life to it's fullest, celebrating the positives...not allowing the negatives to keep you down. You keep being happy, not letting the waves knock you down, and By gosh keep cartwheeling...in your driveway, especially in your nightgown!!!!!!

I don't comment often, but I do read every post. From one Michigander to another, thank you. Your words and positive attitude have really helped me keep a good perspective when things are less than perfect.

Your news piece was amazing. It had me crying all over again even though I've read Nella's birth story (more than once!). You are such an inspiration not only to other moms and to the uneducated parents out there, but just to the world in general. Your ability to see the world through rose colored glasses is so inspiring and I'm so happy I found your blog. Have a great time at the party, can't wait to see pictures!

As I was sitting here watching the new piece my 6 year old came to peak over my children and wanted to know what it was about. I told her and she said "So?" It just makes you realize how precious children are. She thinks Nella is adorable (she is baby crazy). And most of all she just wants to know what you were laughing about in the third picture. She thinks maybe a crab or maybe you were tickling her. Have a joy filled day! And maybe even give her a little hug and tickle from my Allie.

Loved your video message. As an avid blog reader I haven't seen you as a real three-dimensional person. You are so lovely, so loving and so open about your experience. Thank you for being such an inspiration and sharing your journey with all of us!

Kelle, this is why I read your blog. I didn't read the comment yesterday but the aftermath of it. It was making me so mad that everyone was focusing on the *stupid person* (I can say it for you!) That person chooses to see the glass half empty and that is sad. The phrase you use so often comes to mind (what will you do with your wild and precious life?) Not bask in negetivity thats for sure. I love your pictures and your words and I love seeing Nella standing tall and heading to the water. I don't know you and I am so proud of you and Nella and how you embrace life!

That picture of the girls in their cars just melted my heart! And the picture of all three of you at the end....Lainey looks so grown up now. The picture of Brett and Nella in the beginning...well those daddy daughter moments are my favorite and the look on his face is priceless. Then Nella at the end. She is just so beautiful Kelle. You have such a gorgeous family. Your sweet souls radiate out into the world through your pictures.

Some days the joy suckers slide off our backs and some days they poke right in there and get us going. Sometimes it good to get defensive about our lives. It reminds us how happy we are with our current challenges and challenges to come. If life was easy it would be boring. There are many days that I look at Nella's pictures and forget all together that she has DS. I'm sure it's hard, but worth every ounce of energy put out. Every child is a challange as they get older regardless of their DNA. At first I was shocked that anyone would have something negative to say about that wonderful piece I read yesterday, but then I was reminded that not everyone is has a positive outlook on life like we do. It's a great reminder to be thankful for who we are inside. Kind, joyous people. :)

and the alternative is?? what?? to be angry sad bitter apprehensive and disappointed all the time?? sheesh. i'm with you. there is a time for thinking ahead..being wise..preparing yourself for what is to come. there is a time for that.. and then that time passes and there is time for allowing this moment to be beautiful for just what it is. good for you. but yeah-- i would have gotten fired up to. :) on a separate note-- i think some people are so terrified of growing through any kind of pain that they think that anything HARD is also terribly tragic and sad. sometimes it's the hard that makes us the most beautiful...

That interview left me in tears. Your honesty is what sets you apart...not many people have the balls to be honest anymore. As for that nasty comment? Fuck 'em. Seriously. It made my heart ache for you, for Nella, for how far the world has yet to come...but really, the comment was about so much more. It was about some people's inability to see the good in anything, a lack of faith that things will turn out as they're meant to. Because really, none of it's in our hands, anyway. It's in Gods hands...we just choose how to handle each moment we're given. Each blessed encounter we have, each day we wake, still breathing. And you my friend? You're making some seriously wise choices. You're choosing to make each day count. That there, will always make some people angry because they desperately want what you have, and they don't...JOY. Beat that on your African drum. xo

There are challenges ahead for ALL our children! I always feel sorry for people who always dwell on the negative - they are missing SO much joy in life. I'm glad you don't get angry, but instead appreciate that you are not that way and your children won't be either. You are doing amazing things Kelle - keep on spreading the joy.

I think you're lucky. Lucky that you know and can prepare for the challenges that may come for your youngest, perfect daughter. I have two sons and only one thing is for sure, there are and will be challenges, but I don't know what they are yet. Studies haven't "shown" what could be in my future (although...I am guessing some trips to talk to the principal's office for my two year old.). You and Nella get a head start on the wild ride.

We all have waves to fight through...I am just glad I am on the same side of them as you.

I read your blog daily, but this is my first comment. I love reading what you write. It has made me bawl like a baby at my desk at work. From time to time, however, I have thought that, perhaps, you were burying your head in the sand and ignoring the cold, hard relaties.

Then, I watched your video. I changed my mind. Somehow hearing you say it was different then reading your beautiful, melodic words. It is clear to me that you understand (probably better than most of us) and you are choosing. Choosing to listen to the good not the bad. Choosing to find the silver lining. You have made the choice, instead of letting circumstances make the choice for you. The choice is simple, choose to be happy, choose to be positive, choose to pick what is important and not focus on the petty, insignificant details.

At the end of the day, I am jealous of your choice and want to learn to make the same for myself. I sometimes lose sight of my blessings. Thank you for helping me refocus.

Kelle, I dislike joy stealers also. Im so with you on that. We realize every aspect of our children. However, we choose to live in a way where we roll with the punches while still ' enjoying the small things' haha. EVERY parent will have hardships. EVERY.SINGLE.ONE.I love how you said "Its not that big of a deal" because in my opinion it isnt. Can it be hard. sure. However, while Down syndrome can cause my child hardships it is not WHO he is. He is a beautiful PERSON living a beautiful life and he just happens to have down syndrome.

AMEN and AMEN! I loved your ABC News interview - you are so right, Nella is just Nella, and what a beautiful Nella she is - And for all those joy suckers - Get a life, why suck someone's joy or my own? Perhaps those joy suckers have never had a taste of joy. You my dear are a joy along with your beautiful family!! You are a true inspiration and a wonderful Mom!Keep on Keeping on!!

I've been reading your blog for some time now, and I have such an appreciation for the way you embrace differences and challenges. I was born with a rare form of dwarfism and, like you're raising Nella, I'm thankful my parents never put limits on me. To that commenter-- they have no perspective. Unfortunately, I have dealt with people like that in my life and quite frankly they suck. How are you supposed to overcome challenges and find the strength to carry on if you cannot find joy in the present and look at the future with hope? Hold onto your joy and make the most of life.

Oh, Kelle. I am a devoted reader, though I've never commented. I also am a mom who has a child she loves dearly who has challenges, the kind that starts with AUT and ends in ISM (I am not yet at the point where I can say the word out loud. I can't even type it apparently). His official eval is next week even though his current doctors and therapists, and more importantly, his dad and I, already know what's going to happen and what the diagnosis will be. We do. We KNOW. But we also know the joy he brings to our life on a daily basis, and the reward that comes from watching him meet a challenge, however small it may seem to other people. But for every lovely friend who encourages our son, and us, there are also people who feel driven to point out how much worse it will get, how much more obvious the delays will become, when the disparities between my son and his peers become even more evident. "Have you thought about what will happen when he becomes an adult? He'll need services." No, I've never given any thought to my son's future, thanks for giving me some food for thought. I am ashamed to say that just this morning some fool said something to me about the extreme difficulty my son would have trying to learn to read, and I sat on my couch and put my head in my hands and just sobbed, the all-out ugly kind. And then I pulled myself together, wiped on some fresh mascara, and got on with it...because what else is there to do, really? And he doesn't deserve it, my son, to have a sad mother. Your post today was just what I needed to remember that. And after I read it, after I gazed at that last indescribably precious photo of Nella, something blurted out of my mouth before I even had a chance to think about what I was saying. And it made me laugh and feel better and so I am going to keep on saying it: Fuck you, joy-suckers.

Sing it sister. This is the choose-to-be-happy swift swat in my behind that I sometimes need and always know I can count on your blog for. Thank you.

p.s. I love the photo you took of the girls playing in their cars. Look at the smiles on both of their faces and their eyes locked on each other's happy faces. That photo is evidence that you and Brett are really doing something right--in fact quite extraordinarily--if I ever saw it.

First of all-that last picture of Nella - oh she looks beautiful...she always does, but that one has a little extra something :)

I feel sorry for that person who had something negative to say. Thats a person who does not know how to enjoy life. They may not have been faced with a challenge that they chose to overcome. I think a lot of people may be envious of the way you choose to look at life. Its a gift. Its not easy to make the most out of every situation and stay positive all the time. You know you're up against some challenges but you don't let it weigh you down. I think that you are such an inspiring woman. These negative nay sayers should open their minds to what you say and how you live - they would learn alot from you. I truly admire how you live life so positively...I'm not a negative person, but there sure are days that I have to shake a mood and thats not easy! You are doing an amazing job and to put your life on here and share with everyone is beautiful. I think you will see far more positive comments than negative. Your interview was wonderful - I can't wait to read your book. One of my moms dear friends has a sister with Downs Syndrome - she is in her 60s now - MaryAnn is her name. She has got the sweetest, purest soul!

I also saw that comment, and became annoyed by it. Then, I continued to read the many other supportive ones! Raising a child with special needs comes with so many challenges, that we cannot afford to look too far ahead. We have to enjoy the moments that we are in, and work through the struggles as they come. Nella is amazing!! Keep following your heart and showing her all that life has to offer. She will continue to shine!

Amen sister! A lot of your posts make me tear up and this one was no different. I truly admire your positive outlook on life. To hell with those who are negative nancys!!! Even though we are strangers, you inspire me to be a better mom to my two boys, to suck the marrow out of every single second with them. So I want to say thank you for that.

That last picture of Nella is adorable. I dont know if you even read these comments, but I just wanted to tell you that my three year old was sitting next to me watching the ABC News special on Nella and your family. He pointed to the screen and said, WOW Mama, that little girl is so pretty! I love that about this age. He looks at Nella and sees a beautiful little girl and not a little girl with Down Syndrome. I hope I can foster that, and grow that, and continue to help him see past someone who has Down Syndrome or any other syndrome. Thank you, for sharing your beautiful family with us.

Thank you, Kelle, for always being positive and inspirational. I love your blog for that. I don't know why there have to be people to try to pop our bubble but there are and always will be. Why not enjoy life and find the good and be happy for others who do?!

I am Linda Nargi's sister, Lila and Lexi's proud aunt, and she introduced me to your blog shortly after Nella was born. I've read it ever since and have gone back to the very beginning to read everything I could!

I love your outlook on life, and your photos. You are an inspiration. Thank you!

Kelle, THIS is your story and it is how you help so many of us who read your blog. I know this sounds SOOO trivial, but in many ways I could wallow in my heartbreak that I don't get to stay home with my children but I focus on all that is good in my life. Thank you for lighting the torch for rising to the occasion that is our life, our family, our journeys.

I don't think I've ever left a comment on your blog, although I am a dedicated reader and delight in it...you truly are amazing and so is your family. I have just watched the ABC film clip and am just sobbing (albeit I am also taking steroids to get rid of a serious case of bronchitis, lol). I would be sobbing without them too...Nella is amazing, beautiful and absolutely perfect, just as Lainey is!! Thank you so much for sharing your lives with us readers in cyber land!

I'm shocked you let this fire you up so much. I'm sad for that.Aren't people strange?But as usual you turn lemons into lemonade. Or basically just squish out the pits this reader gave you and said BOO YA!Good on ya Kelle.Wonderful words and wonderful feelings.Your family has such a positive outlook on everything. It is catchy.Happy weekend to come!

LOVE LOVE LOVE!!! And YES, mama. Why would anyone want to do anything other than enjoy life just because it could get worse... it can also get better. It's not easy, but it's SO much more worth it. I'm about in tears right now and can only say, AMEN. haha.

Your words moved me. I was JUST talking about this with a friend before reading your post. Why does it take some people YEARS to get over themselves and get on with life when something like this diagnosis enters their world? I don't get it. I read something from another parent today that I just couldn't relate to...the sorrow, the bitterness, the shame. I relate to YOU!! The joy, the perspective, the inspiration. THANK YOU!

In other news, Levi pulled up on his own today!

And now...I am off to do a cartwheel in the driveway on my way to get the mail!

AMEN, sista! Truly happy people emanate happiness...unhappy people emanate unhappiness and can't understand how someone could CHOOSE to be happy, because they aren't doing it themselves. Instead, they spend time raining on other people's parades and believing that happy people are ignorant and unrealistic. Hmm...if being happy makes me those things, then I suppose I'm okay with that! You are an inspiration to me to choose happiness in the face of adversity and challenges thrown my way. That last picture of Nella is PRICELESS! :)

You are so awesome Kelle. I don't know what else to say but that. You. Nella. Your family. Your writing. Your mindset. A-W-E-S-O-M-E. I never saw the comment but thank you so much for writing this post about how today is all that matters.

Thank you for sharing your life!! You are such an inspiration in my life and in reminding me how to enjoy the little things. (like my children and spending time with them)I love reading your blog and I love little Nella! She is such a beautiful little girl. God has big plans for her!

I had to smile. Oh, how different our girls are - yet so similar. Lindsey turned 2 on the 18th...and guess who had a tea party theme? I even got super crafty and made her a homemade teapot shaped cake. Though that was the extent of my craftiness. I applaud your desire to seek joy. And admire your ability to quietly admit it isn't always unicorns and rainbows. Keep on enjoying the small things, Kelle.

Kelle the way you share your lives with us... you have captured all our hearts and none of us will ever let go. We are all better people because of you and your family. The kick ass courage it took to start sharing every raw emotion with all of us is pure uninhibited grace. Nella's strength and pure determination inspires and heals us all. She is the perfect one. Her heart is truly pure. We are the ones who have a lot to learn. And I am grateful, threw you, Nella is teaching us all to be kinder, loving, non-judge mental, happier, determined individuals. And with her darling big sister by her side, I know the two of them are going to take on the world! And WIN!! Grace: how you climb up the mountain is just as important as how you get down the mountain, and so it is with life, which for many of us becomes one BIG gigantic test followed by one big gigantic lesson. In the end it all comes down to one word... Grace... It's how you accept the winning and loosing, good luck and bad luck, the darkness and the light.

This is why I read your blog. You inspire me everyday and reinforce the belief that yes, sometimes it takes a bit more work but making everyday count IS worth it! I work full time and go to school but by God I refuse to let that keep me from making my days count. I catch flack for it often especially if I complain about being tired or stressed. I get the "well you bring it on yourself" look. I love life. I love celebrating. I love seeing my girls' smiles when they wake up to green eggs and ham with a Cat In The Hat themed breakfast. Yes I stayed up way too late to do it but their reaction is sooooo worth it. It is these purposeful decisions to make them feel special that I will be most proud of when I look back on my moments as a mom. Your zest for life is contagious. Keep on passing it along!

You're a global inspiration, Kelle. Global. Someone is going to be jealous and nasty about that, unfortunately. But your inspirational joy touches so many lives, including mine. You remind us to enjoy life. What a gift!

So happy to hear of your successes, and always wishing you many more, and most of all, continued joy.

Totally off topic, but my little man needs glasses & I remembered how cuuuuuuuute Nella looked in her little rectangular lenses. I looked back at the post and didn't see where you found them online-is there any way you could share the website where you ordered the frames?

I too have a special needs child and can relate how much others try to bring me down/up to their own struggles. If we didn't celebrate all the goodness of our children, special needs or typical developing, then we really wouldn't be doing our jobs as parents. I have decided long ago to not let the opinions/ignorance of others dictate my attitude, but honestly, we are human. Sometimes it happens, and I feel very strongly that it is my job at that moment to forgive what others do not know, and that is JOY that all children bring. In the good times and the struggles. We must celebrate our children's strengths if we are to raise them to be compassionate adults. We have a responsibility to see the good in all that they do. If not, then as they walk out the front door, they assume that they are defined by what they lack, and not celebrated by what they have to offer.

Shame on that person for trying to piss on your unicorn! It's too bad we have to listen to those that suck the happy out of life and try to do the same for others. We are better, we are wiser and we are enjoying life. Great post as always and what a stunning last photo of Nella admiring herself. Such a beauty!

Amen! Hallelujah! and all that jazz... I absolutely LOVED your comments in response to the joy-suckers, your "grab life by the balls" (as you put it) outlook is what keeps me reading. I look forward to every new post you write and practically squeal with joy when I look at my blogger reading list and there you are with a new post. Thank you immensely for sharing your story and incredible photos with the likes of us.

"There is reason for everyone to be unhappy. There is reason for everyone to be happy. What's your focus?" Loved that comment! My 7 yr old and I have been having conversations surrounding "it's all about your perspective, if you want to be happy and see the good, you can" So really hit home and will help me give her another way to say it!I am a rose colored glasses girl all the way and sometimes my sweet little girl puts on the gray colored lenses, she needs to learn to change her glasses and we talk about how she can choose to see the joy!Thanks for spreading the joy Kelle! Have a great day!

Your viewpoint and spirit is amazing. You are raising a beautiful family. There is ALWAYS something scary out there, for all of us. Why dwell on it? Screw that Negative Nancy! Continue to enjoy every moment!!

I have written to you about my son, Ben, who had a heart so big he was only able to be with us for two years. We were so proud to give to Nellas birthday fund last year and this year in his honor and memory. Here's the thing: every piece of news we got about him (the DS diagnosis, the heart news, the other heart news, the OTHER heart news...) all of it, those days were the worst days. The challenges? Like waiting until he was 18 months old for him to sit up by himself? Yeah, not so bad....because meeting those challenges...kicking them down the road? MAGIC, baby. I pray for challenges because I get to accomplish them!!! THAT'S big!!! Do I miss Ben every day? Hell yes!!! But my gratitude and love and awe at what I was able to share with him is SO much bigger than that. So I say preach on, sista!!!! XO

I have been asked recently who or what is my inspiration...My response was Nella-Now, I am sure the person asking me assumed Nella was a friend or family member whom I aspire to be- and in a way, I feel like she is:) She is the more free-spirited little ray of sunshine I have ever seen:) I love your posts, I love your strength and I love your passion- You are a Super Mama with Super Babies and Husband:)

I can completely understand why a comment like that would stick in your craw. People just feel the need to be so negative sometimes and they defend it by claiming that they are just being realistic. But what it boils down to is negative, mean hearted people trying to bring down the positive and inspiring people (like yourself). It is so sad.On a much happier note, as usual your pics are amazing. And the last one of Nella, I can't get over it. It speaks more than volumes about that beautiful little girl.

What an awesome, inspiring post. I was introduced to your blog this summer when we found out in our 28th week of pregnancy that our sweet boy would be born with Down syndrome. I absolutely love your attitude and there are so many times that I read your words and think "YES, that is exactly what I feel like". Today was no different. I am loving my little guy and just soaking up every sweet moment. He is our third and final child so I am savoring every precious moment of his babyhood. Of course I know that his future will be hard just like I know my daughters are going to grow up and be teenagers that yell at me and make me crazy but I'd rather just enjoy the fact that for now, they think their mom and dad are the coolest people they know. Thanks for your awesome attitude and beautiful pictures. Can't wait to watch that news clip.

Kelle~ Yesterday, I watched that beautiful interview and cried...it was truly beautiful. Nella is happy, healthy, safe and loved. Are those not the most important things in life? When I see photos of Nella and Lainey I only see joy.

This is why I follow your blog on the reg...you take something negative and turn it into such a positive. I love your views and you inspire me to be a better person! Don't let one narcissistic person suck your joy :) xoxo Anne

Joy suckers suck! They just do. I let them get me down everytime and then remember - THEY must be so sad and miserable that it takes everything they have to find an ounce of joy. Now THAT'S sad! I think you rock and I thought the piece you did for ABC News was terrific. Loved it.

that's just it, Kelle---you "get it" and joy suckers don't. that's why we keep coming back to your blog--because you are such an example to others about choosing joy over despair...and seeing the blessings in the struggles.